When you have cystic fibrosis, the one thing you can be certain of is change -- changes in lung function, symptoms, medications, care routines, and more. Having lived with this disease for 31 years now, I've gotten pretty good at learning to roll with these changes. But, looking back, one change stands out as being one of the most difficult for me: the transition from pediatric to adult care.
During my childhood, my mom was my primary caregiver and medical advocate. My mom, my older sister with CF, and I did everything together. Clinic visits became mother-daughter girls' days. My sister and I were hospitalized together every year, and my mom would stay in the hospital with us as often as possible. I was never alone.
When my sister transitioned to the adult clinic, things changed. It was strange to suddenly be doing all those things without her. I realized there would be a time that I, too, would move on to an adult center, and I began fearing that transition. I had known my pediatric team for as long as I could remember. I was familiar with my hospital and the way they ran things. I didn't want that to change.
When the time came for me to move on, I felt like a baby bird being booted out of the nest. I remember crying as I entered the adult center for the first time. Right away I didn't really like my new doctor. There were no familiar faces on the team. I was asked to discuss my medical history and detail my current treatment plan, which was incredibly difficult for me since my mom had always done that part. To top it all off, I got lost when I left clinic and had to ask for directions to the parking garage; the entire experience was awful.
I decided right then and there: I wouldn't feel so scared and overwhelmed if I didn't come back to clinic. I was an adult now, so I could make that decision, right? Over the next couple years, I only attended occasionally. I'd make up excuses about why I had to cancel my appointment, we'd reschedule, and I'd cancel again. This went on for quite some time, but it was not a sustainable pattern.
When I was 22 years old, shortly after having my daughter, I had a major health scare. As a result, I experienced my first adult hospital admission.
More than the physical pain I was in, what I remember most about that stay is how terrified I was. I didn't know anyone, I was unfamiliar with this new place, and I felt so very alone. The struggle I was going through, both physically and emotionally, was unlike anything I had ever known.
A few days into my stay, my phone rang. When I picked it up, I heard a somewhat familiar voice. It was my doctor. The same doctor I had seen at that first clinic visit -- the one I vowed I would never like.
She was calling from out of town to check on me because she knew I must be having a difficult time. She didn't simply call and talk to the nurses or the attending physician on my case, she wanted to speak with me directly.
That was the first time I considered the possibility that perhaps I had passed judgement too quickly. Maybe I hadn't even given this new place a chance. Had I simply decided I wouldn't like my new CF team before ever meeting them? I began noticing little things: the gentle way in which my team spoke to me about the importance of compliance, someone bringing me French fries because I had mentioned I was craving them, everyone making sure I was as comfortable as possible.
It didn't take long before I realized how much this new team genuinely cared about me. I even began to feel like they understood me on a deeper level than my pediatric team had, and they encouraged me to take a more active role in my care. I had been so fearful about changing centers that I hadn't taken a moment to think that this change might be a good one!
I am happy to report that now, almost a decade later, I am being cared for at the same center and many of those original team members are still there. These days, I am compliant and I never miss clinic visits! Not only do I like my CF team, I love them. They have become my CF family.
Looking back, I wish I had felt more prepared for the transition to adult care. If someone from my pediatric center could have “held my hand,” so to speak, during that first adult appointment, or if I had been introduced to the adult team while I was still under pediatric care, the transition might have been easier. I also wish I had trusted myself more and taken a more active role in my care before reaching adulthood, so I would have known how to better advocate for myself. But, most of all, I wish I hadn't been so stubborn and would have given my new adult team a real chance. It would have been so much easier to make that change together rather than me fighting it, and them, the whole way.
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